Principles of justice in health care rationing

Abstract

This paper compares and contrasts three different substantive (as opposed to procedural) principles of justice for making
health care priority-setting or “rationing” decisions: need principles, maximising principles and egalitarian principles.
The principles are compared by tracing out their implications for a hypothetical rationing decision involving four identified
patients. This decision has been the subject of an empirical study of public opinion based on small-group discussions, which
found that the public seem to support a pluralistic combination of all three kinds of rationing principle. In conclusion,
it is suggested that there is room for further work by philosophers and others on the development of a coherent and pluralistic
theory of health care rationing which accords with public opinions.

Introduction

Textbooks and handbooks of medical ethics1–3 typically recommend that medico-moral decisions should be guided by four basic philosophical principles: (i) respect for
autonomy, (ii) beneficence (“the patient's interests come first”), (iii) non-maleficence (“above all do no harm”), and (iv)
justice. This paper is about the fourth of these principles: in the context of day-to-day health care priority-setting or
rationing decisions by clinicians and administrators, what does “justice” really mean?

Three different principles of justice in health care rationing decisions are commonly discussed in the academic literature:
need principles, maximising principles and egalitarian principles. This paper compares and contrasts these three principles
with reference to a hypothetical rationing dilemma involving four identified patients. One purpose of this exercise is to
tease out the similarities and differences between each principle. A second purpose is to enable comparison between these
theoretical principles and the views of the UK general public, whose opinions about this hypothetical example have previously
been investigated in an empirical study based on small-group discussions.4

This paper focuses on principles of substantive justice in making decisions about who should get what health care and when,
rather than principles of procedural justice about what decision making process should be followed. This means, for example,
that contractarian principles of distribution according to a process of voluntary transactions are not discussed.5 In addition, there may be other less well-known substantive principles of justice not discussed in this paper. Given time
and resource constraints, it was not possible to perform a systematic and comprehensive review of all principles of justice
that have ever been proposed, since bibliographic information on the relevant humanities and social sciences literature is
widely dispersed among many different bibliographic sources.

The paper does not address broader questions about health care rationing, such as (1) whether or not rationing is inevitable,
(2) whether or not rationing should be explicit, and (3) whether or not different rationing principles should apply in different
contexts (for example, “macro” spending choices versus “micro” choices between patients). Nor does it address the question
of whether or not it is possible and/or desirable for a society to agree on a single set of principles to guide health care
rationing decisions in different contexts. Some academics argue that it is naive to expect that rationing principles will
be consistently followed in practice, and that the best we can hope for is to identify better procedures for making decisions
(for instance involving more public participation). This position has been referred to as “muddling through elegantly”.6 Even if this position is accepted, however, there will still be a role for philosophical discussion of substantive rationing
principles, to help clarify the thinking of those who participate in the process of rationing.

The rationing principles

Table 1 lists the main substantive rationing principles that we identified from the literature, classified into three major
categories: need principles, maximising principles and egalitarian principles. Need principles require that health care be
distributed in proportion to “need” (for example, in terms of immediate ill health). Maximising principles require that health
care be distributed so as to achieve maximum “benefit” (for example, in terms of population health). Finally, egalitarian
principles require that health care be distributed so as to reduce “inequality” (for example, in terms of lifetime health).

Commonly discussed variants in each category are also listed, with an associated implication for the hypothetical rationing
choice between four patients (Daniel, Joanne, Marinder and Steve) which is reproduced in Figure 1. The implications are based
on various working assumptions summarised in a footnote to Table 1. One assumption, for example, is that Steve stands to gain
the most health from treatment, Joanne the least, and that Daniel and Marinder stand to gain about the same amount. We leave
it to the reader to work out how the implications would differ if different assumptions were made. In what follows, each rationing
principle is briefly described in turn, together with an explanation of how we worked out the associated implication.

NEED PRINCIPLES I: NEED AS ILL HEALTH

Distribution of health care according to need is perhaps the most widely discussed rationing principle in both academic and
non-academic debates. It is especially popular among clinicians, who see themselves as the expert judges of need and hence
typically use the phrase “clinical need”. The British Medical Association guidelines on medical ethics,7 for example, suggest that most clinicians accept the principle of distribution according to clinical need. And the Chairman
of The Royal College of General Practitioners, Sir John Toby, has stated that: “We don't believe there should be discrimination
on any grounds other than on clinical need”.8 However, unless the concept of “clinical need” is clearly defined using substantive criteria, this principle reduces to the
rather unpalatable procedural principle that any rationing decision must be correct so long as a clinician has taken it.

Different definitions of “need” lead to quite different substantive rationing principles. The most common strategy is to define
need in terms of the degree of ill health. For example, it can be argued that an immediate threat to life (for example, within
the next year or so) is the most urgent and pressing form of ill health, and that saving (or prolonging) life should almost
always take priority over enhancing life.9 In our rationing exercise, this narrow definition of need as immediate threat to life would imply that Daniel should have
priority, on the grounds that Steve, Marinder and (arguably) Joanne are not facing an immediate threat to life. Joanne would
presumably then take second place, since she faces the next most immediate threat to life as she starts to develop the AIDS
virus.

A second, broader definition of need as ill health would encompass immediate pain and suffering (for example, Marinder's bad
hip) as well as immediate threat to life.10 Need can then be interpreted as the individual's immediate degree of ill health.2 On the basis that Joanne is not immediately suffering, since she has only just been diagnosed HIV positive, it seems plausible
that Daniel is the most immediately ill (and hence should have priority according to this second need principle), followed
by Marinder, then Steve, then Joanne.

The two need principles discussed above are both sometimes called the “Rule of Rescue”.10, 11 The idea behind this phrase is that society has a duty to do everything possible to rescue all those facing immediate threats
to life and/or health. This phrase can be misleading, however, since it suggests that health care rationing is a binary question
about whether or not to rescue those in immediate need. As in our hypothetical example, it may not be possible to rescue all
those in need, and rescuing one person may have the consequence that other people cannot be rescued. When considering need
principles, however, it is important to emphasise the point that many rationing decisions will require a comparative judgment
about the relative degree of need, as well as a binary judgment about whether or not a need exists.

A third (rarely discussed) possibility is to broaden even further the interpretation of need as ill health by taking a broader
time horizon—for instance by looking at the individual's whole lifetime of ill health rather than just his or her immediate
situation (for example, ill health in the next year or so). If we did this, then Marinder would fall down the ranking relative
to Steve and Joanne. This is because she has already enjoyed a relatively long (and healthy?) life and so appears relatively
less needy from a lifetime perspective than from an immediate perspective.

It is also possible to define need in terms of the potential to benefit from health care, as opposed to the initial level
of ill health. However, we will be in a better position to discuss need definitions of this kind later on, once we have looked
at maximising principles which are more directly concerned with the benefits from health care.

MAXIMISING PRINCIPLES

According to maximising principles, justice requires that health care should be distributed so as to bring about the best
possible consequences (although, of course, different maximising principles evaluate consequences in different ways). Maximising
principles are popular among economists, since they are broadly utilitarian in focus (although rarely the same as classical
utilitarianism) and fit well with the consequentialist logic of the classical model of rational choice that underpins standard
economic theory. What such principles imply always depends crucially on what estimates are made about the likely consequences
of different courses of action.

Perhaps the most obvious maximising principle in this context is to maximise aggregate population health.12 This is not the same thing as classical utilitarianism, since the consequence being valued is health rather than happiness
(which presumably requires more than good health alone). In our rationing exercise, use of this principle would essentially
imply treating the patient who is expected to gain the largest total amount of health over his or her remaining lifespan,
although also taking into account possible indirect consequences for other people's health (for example, due to health care
resources freed up for treating other patients). The actual implication will depend crucially on what estimates are made about
the expected health gain.

Our working assumption is that Steve gains the most health. However, if we modify this to assume that Daniel can be expected
to live a full life if the treatment is successful, then Daniel would come out top. It is also possible that this implication
might have to be modified if we estimate the indirect health consequences of the decision. One set of indirect consequences
involves the costs of long term care for Marinder (both financial and in terms of a burden to her son), who will not be able
to live independently without the hip replacement. The resources freed up by reducing the burden of long term care for Marinder
might be used elsewhere to improve the health of others.

Another possible indirect consequence might be health gains to patients in the future from knowledge learned by trying out
the experimental drug on Daniel (which would, of course, count in Daniel's favour). A third is the possibility that Steve's
and Daniel's parent(s) will suffer ill health if their son is denied treatment (counting in both Steve's and Daniel's favour).

A less obvious form of indirect health consequence is the possibility that, if successfully treated, Daniel might be able
to have children. If Daniel's unborn children are straightforwardly counted as an addition to the relevant population, this
might swing the principle of maximising total population health back in his favour (since treatment is less likely to influence
the ability of any of the other patients to have children). However, maximising principles are usually taken to refer to the
existing population only, and adding people to the population is typically not counted as a benefit. Furthermore, the issue
of valuing unborn generations raises a number of unresolved conceptual difficulties.13

A rather broader maximising principle is to maximise wellbeing or flourishing, which includes aspects of wellbeing other than
health. This is not necessarily the same thing as classical utilitarianism, since wellbeing can be understood in terms of
“objective” capabilities (for example, the ability to form and achieve goals, to interact with others, and so on) as well
as subjective pleasures or desires.14 In our example, considerations other than health gains might include wider (non-health) aspects of each patient's quality
of life, and how much anguish parents or relatives might feel. Given further information, either or both of these considerations
might modify the health maximisation implication. In the absence of this information, however, we cannot tell whether or how
the implication might change.

NEED PRINCIPLES II: NEED AS CAPACITY TO BENEFIT

So far, the need principles reviewed in this paper have all defined need in terms of ill health, more or less broadly understood.
However, some economists have argued that any definition of need in terms of ill health is inadequate because it pays no attention
to how much benefit the health care is likely to bring. No matter how ill a patient is, it is hard to see how she can “need”
health care that does no good. Economists have proposed two alternative definitions of need which might be able to deal with
this point.

The first proposal is to re-interpret need directly in terms of the individual's capacity to gain health from treatment.15 In our rationing exercise, this interpretation would require us to rank patients in order of health gain, as a maximising
principle would essentially imply (ignoring indirect health consequences). More generally, however, the principle “distribute
in proportion to capacity to benefit” is not the same as the principle “maximise health”.16 A maximising principle will imply concentrating resources on those who stand to gain the most, possibly to the exclusion
of those who gain the least. A (proportionate) need principle, by contrast, will always imply giving some health care to those with lesser needs (ie, in proportion to those needs).

In our example, however, a proportionality principle is hard to apply literally, because it will do no good to share the £4,000
between all four patients. The only way to apply it literally would be to hold a cleverly designed lottery in which the probability
of being treated is proportional to capacity to benefit, thus maintaining proportionality in the distribution of expected health care.

Some economists have argued that identifying need with capacity to benefit implies a bias against people who need expensive
treatments.17 If two people, A and B, have the same need (capacity to benefit), but treating A is more expensive than treating B, then
distributing expenditure according to capacity to benefit might mean that B gets treated but A does not, even though they
have the same needs. To incorporate this point, it has been proposed that need should be interpreted as the cost of treating
the patient so as to exhaust capacity to benefit.17, 18 In our exercise, if we assume that no further beneficial treatments are available to each patient, then a need principle
based on this definition would imply giving equal priority to all four patients (since each treatment costs the same).

EGALITARIAN PRINCIPLES

According to egalitarian principles, health care resources should be allocated so as to reduce inequalities in health. Most
authors who advocate egalitarian principles would in fact not pursue equality as a sole objective, but would rather combine
the goal of equality with other principles of justice (such as maximising health).19, 20 We can still ask, however, what a “pure” egalitarian principle would recommend, as a first step before examining how further
considerations might modify this recommendation.

One form of equalising principle is the “fair innings” argument that everyone is entitled to a similarly long and healthy
life.19 A strict principle of equalising lifetime health, with no weight given to any other principle of justice, would perhaps give
top priority to Daniel (who has the lowest lifetime health expectancy), then Joanne, then Steve, and finally Marinder (who,
being elderly, has already enjoyed the longest lifespan).

A second kind of equalising principle focuses on equalising people's opportunity for lifetime health, rather than achieved levels of health, to account for individual freedom of choice and autonomy in making
choices that influence health.20 According to this view of equality, justice is done if people who choose not to exercise their opportunity for health (for
example by leading an unhealthy lifestyle) achieve lower levels of health. If, for instance, Joanne's drug taking were to
be regarded as a free choice, whereas Steve's car accident were regarded as beyond his own control, then Joanne's lower lifetime
health expectancy might be considered just on an equality-of-opportunity view. This would then modify the recommendation of
the “fair innings” principle, by giving less weight to Joanne and more to Steve. In the extreme, it might even be considered
that Joanne had a greater opportunity for lifetime health than Mirander (for example, if she came from a more privileged background),
and was entirely to blame in squandering this opportunity through drug abuse. The assumption that Joanne's predicament is
entirely her own fault (and had nothing to do with socio-economic conditions or bad luck) seems implausible, however, and
so the principle of equality of lifetime opportunity for health seems unlikely to imply giving Mirander higher priority than
Joanne.

COMBINATION PRINCIPLES

Combination principles combine different principles together in a structured manner—ie, by clearly specifying how the combination
is to be done. One way to combine principles is for a secondary principle to come into operation only when the primary principle
does not yield a definite answer. Harris has argued for a combined principle of this kind, which combines a narrow (life-saving)
needs principle with a lottery principle. He proposes that priority be accorded to saving life as the primary principle, and
that a lottery should come into operation if two or more people have equal immediate threat to life and resources remain scarce.9

A second way to combine principles is for two principles to be weighted together, neither having absolute priority over the
other. Williams has advocated a quantifiable combination principle of this kind, which gives weight to both the equalising
principle of reducing inequalities in lifetime health and to the maximising principle of maximising aggregate health.19 The ranking of the patients in the rationing exercise would depend on the relative weights given to these two principles
(ie, society's degree of aversion to inequality). We have assumed mild aversion to inequality, so that the ranking is largely
determined by health maximisation alone (with Steve and Joanne retaining first and last places, respectively) but Daniel gains
priority over Marinder on grounds of reducing health inequalities.

Lockwood has also argued for a combination position, but this time one which combines a need principle with a maximising principle.21 More precisely, he endorses the need principle of distributing in proportion to immediate ill health, coupled with the maximising
principle of maximising health. It is not clear what this would imply in our exercise, because it all depends on how much
weight these conflicting principles are given, and Lockwood gives no indication of how this weighting should be done.

One way of putting into effect a combination principle of this kind so that it does yield specific implications has been explored
by Hadorn, and was used in modified form by the Oregon Health Services Commission to draw up a package of health care services
that should qualify for public funding.10 In essence, the procedure is to rank health care services according to their degree of relative effectiveness, and then to
calculate how far the health care budget will stretch down that list of treatments. Only those health care services which
are ranked above this line are funded, so that health care is provided only when its effectiveness is above a certain threshold.
This procedure gives some weight to maximising health (because relatively ineffective health care is not funded) and some
weight to distributing in proportion to capacity to benefit (because relatively effective health care is funded even if it
is not cost-effective). If we applied this principle to the budget of £4,000 in our example, then Steve would come out top
of the list as his is the most effective treatment according to our working assumptions.

Broome has also proposed a combination of maximising and need principles.16 His proposal is that decisions should balance a maximising principle against the demands of “fairness”, which he argues should
be understood in the context of health care as a need principle combined with a lottery in cases of equal need. However, Broome
does not endorse a particular maximising principle or a particular interpretation of need; nor does he specify how the weighting
of principles is to be done. So it is hard to know what his combination principle would recommend in our exercise.

Arguably, though, the demands of “fairness” do not come into play in our particular example, because it will do no good to
any of the patients to share out the £4,000 among them in proportion to need. If so, Broome's combination principle in this
case would boil down to a straightforward maximising principle, which (as discussed above) would give priority to Steve.

Comparison with what the public thinks

A previous study has examined public views about the hypothetical rationing decision we have been using to illustrate alternative
rationing principles.4 This study involved 60 members of the general public drawn from two urban general practices in the York area of England.
Respondents took part in two separate small-group discussions of various questions about health care rationing, including
the hypothetical rationing decision discussed in this paper. Respondents were told that the purpose of the hypothetical exercise
was to encourage discussion of general ethical principles, and that it was not intended to be a realistic example. The detailed
methodology and results from this study are presented elsewhere.4

The basic finding of this study was that the public support a combination of all three kinds of substantive principle proposed
in the academic literature: needs, maximising and egalitarian. Daniel was the top or joint-top priority for 80% of respondents,
followed by Marinder and then Steve, with Joanne receiving lowest priority on average (although with considerable variation
between individual respondents in their second and lower-level rankings). The most common justifications for the decisions
were that: i) Daniel, Marinder and Steve gain more health from treatment than Joanne; ii) Daniel is a child; iii) Daniel is
in urgent need of life-saving treatment; and iv) Joanne's illness is self-inflicted. There was near universal agreement that
the first three of these considerations should be taken into account, but considerable debate and disagreement about the fourth.
It was clear that no single consideration had overriding weight, but rather that respondents weighed these sometimes conflicting
considerations together.

It is remarkable that, although all of these principles have been discussed in the literature in isolation, to our knowledge
this combination of principles which seems to be favoured by the public has never been proposed in the literature or developed
into a coherent theoretical position.

Discussion

Three main types of principle for justice in making health care rationing decisions are commonly proposed in the academic
literature: need principles, maximising principles and egalitarian principles. However, each of these principles is more narrowly
focused than the pluralistic combination of principles which appear to be supported by the general public, and philosophers
have yet to develop a coherent theory which combines all three principles.

Of course, one possible reason why philosophers have not developed a theory of justice that accords with public opinion is
that they do not see this as their job. Instead, they may see it as their job to point out the errors and confusions of popular
thinking. In other words, the public may simply be wrong or confused in trying to combine such a pluralistic combination of
rationing principles.

However, a second possible reason is that philosophers have generally been reluctant to address the issue of justice in health
care rationing at all. Much of the literature on this topic (but by no means all of it) is written by health economists. Philosophers
specialising in medical ethics have tended to concentrate on decisions about particular patients rather than decisions about
the distribution of health care among patients. And those specialising in moral and political philosophy more generally have
tended to concentrate on constitutional decisions about the basic institutions of the health care system, rather than policy
decisions about the day-to-day running of that health system.

This reluctance of professional philosophers to tackle day-to-day policy questions about justice in health care rationing
can be seen in the work of Daniels,22 who has extended Rawls's famous theory of justice23 to apply to the health care system. Daniels advocates a general theory according to which the health care system should be
designed so as to bring everyone as close as possible to a decent minimum level of health, which he refers to as “normal species
functioning”.22 But, he acknowledges that policy-makers will not find answers in his theory to “their most immediate and pressing questions”.22 This same reluctance is also demonstrated by Richard Hare who advocates a sophisticated utilitarian theory and has applied
it to a variety of problems in applied ethics.24 In the context of health care, however, he says that: “I am not very well versed in the details of these problems, and have
had to content myself with giving what I think is the best philosophical basis for their solution, leaving it to others to
apply it to the various difficulties that all who seek to provide an adequate health service are faced with”.

In conclusion, then, it is our contention that there is scope for further philosophical work in developing new theories of
justice in health care rationing, which are more pluralistic than distribution according to need, or health maximisation,
and more consonant with the commonsense moral intuitions of the public.

Acknowledgments

We would like to thank Nottingham Health Authority for permission to use their “How would you choose?” exercise. We would
also like to thank John Broome, Tony Culyer, John Harris, Paul Menzel, Peter Singer and Alan Williams for extremely helpful
comments, although responsibility for the content of this paper lies entirely with the authors. This research was partly funded
by the Northern and Yorkshire Regional Research and Development Office, whom we would also like to thank.

Footnotes

Richard Cookson is Senior Lecturer, the Health Economics Group, School of Health Policy and Practice, University of East Anglia.
Paul Dolan is Reader in Health Economics, School of Health and Related Research and Department of Economics, University of
Sheffield.